[Illy68Participant]

Hi all,

I've been monitoring all your threads and supportive messages over the last two weeks and I must say what a great bunch of people you all are.My Dad was Diagnosed two weeks ago & he is 66yrs old.He came about Diagnoses due to breaking his collarbone while just eating his breakfast.Anyhow you can all imagine what happened next.Off to the Hospital & x-rays confirmed the break but it did not look right to the A & E Dr's so orthopaedics looked at it & Dad was admitted to a ward at Leicester Royal Infirmary .More x-rays that followed on the Friday led the Orthopaedics to call me & my Mum in to have a chat saying they suspected Cancer.Due to the nature of the break and how easy he broke it & that they were running more tests & at that point they were not 100% but they suspected Myeloma,so Dad had bone density & marrow tests & bloods taken all in house which if he had been an outpatient I think would have took much longer.He was put on a course of pain relief and given Radiotherapy for his lesions of which they found on his left shoulder & pelvis & back.Dad has other health issues such as ten years ago he had a heart attack and has meds for that and earlier this year was diagnosed type 2 Diabetes & more meds for control of that.Dad is out of hospital now but just before he came out he was put on Dex steroid,boy did we see a change in him then I have never heard him talk so much or be so hyper.But the Dr's did explain all this.This week Dad started on his Chemo.of which he was offered the trial Myeloma X1 he is on RCDa.I'm sure I've got the right terminology.So far so good no side effects so hopefully fingers crossed he continues that way.It has been a big shock to the family as you can imagine as I know from reading your posts you all have too with your own personal journey's.our family have all been on a roller coaster this last few weeks.I've seen a strapping ex army man go from being very independent & confident to being shattered and broken.Seeing my Dad this way sent a whole host of emotions rocket all over the place.But you know since he was Diagnosed I have looked up everything that my brain can digest on Myeloma to help my Dad & Mum through & I've done anything they have needed & emotionally supported too.It can't be easy for Mum neither as she has had to give up some of her interests and start to live in the Myeloma bubble.But I'm not going to let that happen as I know how important it is for her to have some time away from the Bubble. four weeks or so before Leading up to this Dad had some rib cage pain and was out of breath at times.Dad was seeing the Docs and told him that he had pulled a muscle and that he could have a frozen shoulder there were other factors as well to many to mention.I said to my husband this could be something serious and I pushed for the Dr's to give him some scans as he did not seem to pick up after a steroid injection.We were brushed off with been watching to many med programmes.No Dr I lost my Mother- in-law to Cancer.My Father-in-law has just got over having a kidney out due to a cancerous tumour we had seen the signs alarm bells started to ring.A few days later from this he broke his Clavicle(collarbone) and the rest is history as they say.Right I've rambled on enough,no I've not been on Dad's Dex though these last few weeks sure could of done with it.:-D Nice to finally feel able to say hi and know that there are other people that know how we are all feeling.Look forward to speaking to you soon.

Regards,
ILLONA.;-)

[dickbParticipant]

Hi Illona, nice if you to join us but unfortunately for very sad reasons. There are a few ex-forces people on here with MM so probably can relate to how your father has changed. As for treatment at least he is getting it. I'm afraid misdiagnoses by GP's seems to happen a lot. Why won't they do automatic blood tests and a 'wellbeing medical' for over 45's? Early diagnosis will be so much cheaper for the NHS.

Anyway, there are plenty here who have had the same experiences and emotions that you and your father will encounter. There are also some who are having treatment at Leicester so there will be help and support for you and your father. Don't believe all the horror stories that are thrown up by the internet, yes, it is a horrible illness but there are still those who are leading a fairly normal life after treatment. As you're probably aware, it is classed as incurable but for me that means quality of life is far more important than longevity and I think that's what you need to focus on for your father.

[CarolsymonsParticipant]

Hi Illona I also hd a spontaneous fracture of my collar bone this year; Easter Sunday as I got put of the bath! But…..after radiotherapy I have full use of my arm, am near to completing 18 weeks of CDT drugs (cyclophosphamide, dexamethasone and thalidomide) that appear to have decimated my cancer markers(paraprotein, immunoglobin a and lambda light chains) so stem cell transplant is looming.

The side effects of the drugs vary from day to day depending on what is on the menu, but are manageable, especially if you check the blood test results and see they are working. The best thing the consultant said to me was "If you have to get cancer this is a better one as it is manageable." Yes it is incurable, but with overall survival rates increasing all the time, I now choose to view myeloma as a chronic disease, like diabetes. Maybe I will be proven wrong as it is early days yet, but talking to your dad in terms of a chronic and manageable disease,rather than a death sentence may lift his spirits. By the way I am 64 years old next month.

Carol

[Illy68Participant]

HI Dick and Carol,

Thank you for the reply's.Dad is being very brave and just getting on with things,he has settled more now treatment has started and side effects are few.The shock of the diagnoses brought on the disbelief at first.He could not take everything in the Healthcare specialists were saying to him everytime we had to find out the next steps.Me and Mum were there everytime so we could go through it with him.I think my Dad just wanted the Dr's to treat him whoever that may have been and not have to know details so much.He is coming round to talking more about treatment and side effects and he has said that he will tell us everything no matter how little.To be honest the only thing he is having are the hiccups and i think that could be the Dex and he is not having them very often.Carol my Dad is 67yrs next month.Hope your doing good both.

Regards,
Illona.

[eveParticipant]

Hi Iiiona
Just a welcome to the site,you are doing all the right things learning as much as you can,hard to take in at first,but do not worry,after awhile it becomes easier.
When people are first diagnosed they tend to be a little bit confused,this is normal,you dad will just want to get on with it as you say,I always go in with my husband,and at times when he is in hospital make sure I am there for the doctors rounds and if I miss it,I see the sister to clarify things.
It is a shock to watch some one shrinking before your eyes,my husband ex marine use to be 6ft 1 and weight 13 stone,he is now 5 ft 8 inches and this morning weighed in at 64.5 Kilos,so do not be to alarmed at weight loss,but when your Dad is hungry get him to eat,plus meals small and often,and fluid is important,if he does not like water,anything he will drink,very important to flush the kidneys out.
What type of myeloma does dad have???? CDT is standed treatment so will leave Revilimid for another occation,when he has his first infusion of Zometa,watch out dor flue like symptoms,good idea to keep a chart on a daily bases then you can tell what days he has good days or bad.helps to keep up with there mood,or dexitude as some people call it.
Good luck ask anything you need I am sure people will be on to welcome you.Eve

[mhnevillParticipant]

Hi Illona

Welcome from me too. Do hope your Dad responds well to the drugs.

Look forward to hearing how things go.

Best wishes.

Mavis

[tonyfParticipant]

Good morning Illona. Thought I would add my comments. I was diagnosed at the age of 67. Until that time I had had no serious health issues and considered myself to be quite fit. Anyway, went through the chemo treatment for 5/6 months, then in February this year (68 years old) had a stem cell transplant, now 8 months down the line I see the specialist every 3 months, next appointment is in November. I am not taking any maintenance drugs, just having a penidronate infusion once a month. I was fortunate that I was diagnosed early and had no bone problems.
I also attend the Royal Infirmary and have found that the team there are fantastic, your dad will be well looked after, I have nothing but praise for the whole team.
Has anyone told you about the support group? They meet monthly and the facilities are open to both patient and carer, so your mum could benefit from what they offer.
Might run into you at a clinic sometime.
If you want any other info you can email me.
Regards
Tony F

[Illy68Participant]

Hi Mavis,Thank you for the welcome and i will let everyone know how he is doing.He is good for now,But has only just started the treatment so early days.Hope you are good.Best Wishes,Illona.xx:-)

Hi Tony,Thanks for the heads up on the support group.Will definatley mention that to Mum.If My Mum was not keen could i go at all?Good to know you are well looked after at the Infirmary.Yes it would be good to see you sometime at the clinic you never know.I'm sure if i have any questions i will be in touch Tony,thanks again for that offer.Anything helps.And you are all helping in more ways than you can imagine.:-)

Best wishes Illona.xx

[willjames2Participant]

Hi Illona,

Welcome to the site and I only wish it was for some other reason instead of your Dads Illness. I too have not been diagnosed that long however I have found there to be some great and knowledgable people here on the forum who all tend to help out with info at the drop of a hat.

dick B makes some good points about testing and GP's and there misdiagnosis. There should be testing carried out to try and determine earlier a proper diagnosis and if you watch Myeloma TV one of the Consultants mentions that they are trying to educate GP's with more information when diagnosing via 'intensive pathways'…let's hope this happens soon so people can get treatment early if diagnosed.

I was told by 3 x different doctors I simply had a muscle strain in my back. One even said it was because I had a weak core and I need to exercise it more! Fair play, I could do with a stronger core however without whinging too much on each occasion it took 10 mins to come to the conclusion that it was a pulled muscle before they kicked me out of the door with the instructions "take paracetamol and ibuprofen and it should improve".

In general though I think GP's do a good job in difficult circumstances and I am an avid supporter of the NHS.

I too am on the Myeloma XI Trial however was randomised for CDT and on the TEAMM Trial for Antibiotics or Placebo (don't know which one for obvious reasons) for the first 12 weeks of treatment to see if it helps. I record my temps etc each day in a patient diary and return to the clinic at Manchester Royal Infirmary where I am receiving my treatment when requested.

Also Carol Symons is spot on with her outlook in my opinion. I see it the same way, ok it's not curable…yet however it is manageable and people can live for many years in remission. With my limited experience the info I have sought tells me that they are making great strides in the treatment and you never know a cure may just be around the corner! Either way any step towards a better quality of life, whether it be through new drugs with low toxicity or anything else that helps Myeloma sufferers can only be a good thing for us and the Consultants, Specialist Nurses and their teams work really hard to make these things happen every day.

Be strong, remain positive for your Dad and Mum…they'll need your support which it seems you are already providing in droves. I'm sure your has Dad had been in some close scrapes during his Army Career and although he has retired now I'll bet he still has a 'Bulldog Fighting Spirit' which was instilled into him during his time in the British Army (and without sounding too jingoistic, in my opinion is the best trained army in the world) I would also wager that because of his experiences he has the correct mindset and attitude to deal with it…once the initial shock is over. It does get easier, trust me I have just been through the shock phase myself but I'm not gonna lie down and roll over, no way. I'm a soldier (figuratively speaking) fighting the evil forces of Myeloma!

Anyway that's enough from me I,m sorry I can't offer any proper advice on treatments etc, I have not been around long enough to offer advice as such yet because it's so early for me. I'll leave that to the experts on here such as the folks above who are very knowledgable.

All the best and give my regards to your Dad.

Scott;-)

[Illy68Participant]

Hi Scott,:-)

Thank you very much for your insight to the evil forces of Myeloma:-P .It is great you took the time to write and it has offered me some positive outlooks.Made me chuckle at times:-D .I will stay positive and fight Dad's corner as i know many years ago when he retired from the Army he kept that knowledge he learnt and tried to instill that in me but at times he had a fight on his hands as i'm strong minded too.>:-)yes my upbringing by him was very regimental and at times i know he ment well but he also regrets a lot of things as i have since found out.Anyway that is another story one i won't go into.It is in the past and all i know is he needs me now and i'm going to be there for the both of them.

And Scott i have an impulsion to call you a Jedi for some reason maybe it is the evil forces of Myeloma and me being a fan of the old Star wars movies.Think i'm letting my imagination run away with me.So i will say in jest may the force be with you!:-P

And i will pass on your wishes to my Dad thank you!
Wish you all the best and thanks once again.
Illona.;-)

[daddiagnosedParticipant]

Hi Illona,

Welcome – if thats the right word 🙂 .

I'm sorry to hear about your dad's diagnosis but you've found the right place for support, advice and generally just getting it all out when it gets too much.

My dad was admitted to hospital just over 8 weeks ago and diagnosed shortly after – hes still there unfortunately 🙁 .
Its astonishing how many of the same symptoms and wrong diagnoses appear on here – so much of your story resonates with me and I'm sure, many others on here.

You're doing the right thing by gathering as much information as you can – I'm sure it will be an enormous help to your mum and especially dad if he gets to a point where he wants to know a little more about whats going on.

All the best to you all – I wish you all the strength and patience that you will need to fight this thing 🙂

Steph

[Illy68Participant]

Thank you Steph!

I'm sorry your Dad is having a hard time and i hope things can get back to a good quality of life for your Dad.
I had noticed you on here when i found this site.Just kept coming on here and trying to see what i could find out first before i took the step to make myself known.It's tough seeing your parents go through this and balance a family life & a job.But with all the great people on here i'm sure they will lift my spirits when i'm withering.:-D

In the words of a great lady My Mother-in-Law who i'm sorry to say is no longer with us.

KEEP SMILEING!:-D

Best wishes to you & yours Steph,
Illona.;-)

[tomParticipant]

Hi Illona

Well a warm welcome to you from I, and am sorry to hear about your Dad, its me that has MM and i class it as "Ongoing" 🙂 Had it since 2009 CTD then SCT both in 09 now in remission and drug free am pleased to say, uphill at times but a doable and worth the fight albeit it feels like you are losing the fight :-S but with the correct drugs it all smooth (ish) out 😀

Good Luck to your Dad in his Road to remission.

Tom Onwards and Upwards xx

[Illy68Participant]

Thank you very much Tom!

Glad to hear your in remission long may you continue to do so.
Thanks for the wishes for my Dads recovery into a good quality of life.
onwards and upwards it is then with a few chinks in the armour along the way.
but we will deal with that if and when it comes.:-)

KEEP SMILEING!:-)

Regards,
Illona.xx 😉

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